My son was diagnosed at 2 weeks old

Hi, my name is Jen, my baby was diagnosed at 12 weeks, it is now 5 weeks later and im finding it hard to go about my normal life. he is on flecanide and has only had one episode which he came out of himself, however i have no piece of mind and get very little sleep..im afraid il miss something. Did you use a heart monitor to check his heart?? We are thinking of purchasing one as it is very hard to get a reading with a stethoscope when the baby is so active...glad to your child is doing well

hi im lisa, my son was diagnosed when he was born it was a big shock to the sytem. It took 2 weeks 4 the doctors the find the right meds 4 him. But that was the best day thats when i took him home, it took some time but i got a stethoscope from the doctors so i could cheak his heart. At 9 months now hes been ok but only when they put his propranolol up so all i can do is look to the future.

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hi would just like to add my son was diagnosed with svt at 4 weeks old he had 25 episodes in total.how it started was he started throwing his bottles up but his vomit was milk and clear fluid and quite sticky which isnt normal and he was being sick out of his nose and mouth,he was also asleep all day which was not normal and i hadnt had play time with him and breathing very fast,we called out the doc and got told to take him to a&e straight away he had cold nose, feet and hands and mottled skin aswell.got to a&e and they rushed him straight in to resus and put him on a heat mat with heat lamp over him a hat on him oxygen tubes up his nose and oxygen mask on we were then told my baby had,had heart failure his lungs were full of fluid,fluid around his heart and liver was swollen and his body was starting to shut down and to prepare for the worse.i was besides myself me and my husband could not believe what was happening it was then that they put him on 12 lead ecg that they said he had svt.they submerged his head in an ice bucket of water which is a vagal monouvere which worked once but didnt after 3 other attempts his heart rate was 367bpm they had to then stabilise him before he could be transferred to alder hey childrens hospital a specialist hospital,he was having adenosine pumped in to him and a dieretic to get rid of excess fluid from his lungs and around his heart we were finally able to move after 12 hours we were in alder hey for 2 weeks they tried him on digoxin and it worked for 36 hours but then svt episodes again.he had canulers out of both arms and they were starting to stop working and keep getting blocked that they would then have took a vain in his head which luckily enough it didnt have to get to that because he was responding to the 2 lots of medication. we finally got discharged on 1.5ml of flecainide 3 times a day and 0.3ml of digoxin twice a day then at 16 weeks he had 3 more attacks because he had grown the mecidine wasnt enough so they increased it to 3ml of flecainide twice a day and 0.5ml of digoxin twice a day which i was glad as it was hard with bottles because with the flecaininde they cant have milk and hour before or an hour after.he hasnt had anymore episodes as yet and is fine on medication was just wondering if other peoples babies have sleepless nights and are thirsty with them being on flecainide as mine is still wanting bottles through the night.he is now 6 1/2 months old and when he is 1 yr old they are weaning him off his medication to see if he has grown out of it so we will see i truelly feel for everyone hwo has been through this situation as it is so frighteneing and you panic constant luckily i have a stethoscope to listen to babs heart aswell and we have been taught to know the difference, spoke to soon just had my little one on 5 day ecg monitor at home as he had heart rate of 210 asleep so just waiting results he is 7 months old and still on his meds so dont know what will happen next but good luck to every one who is in the same situation x